Endocrinologist test results - please help me! ... - Thyroid UK

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Endocrinologist test results - please help me! (And ferritin not going up)

Sick-and-Tired profile image
14 Replies

Hi everyone,

I received some blood test results from my endocrinologist.

She had said in my last appointment that if these tests didn't show anything up then it's "just chronic fatigue".

I've attached a photo of my results and wondered what you all thought. I know that she hasn't run some tests which would be useful to know (like vitamin D).

I'm currently taking 100mcg levothyroxine (mornings), 5,000 vitamin D and K2 (lunch time) and 5mg Iron spray and magnesium oil (evenings) every day. I've also been eating liver once a week and trying to keep a balanced diet. I'm on a strictly gluten free diet.

My ferritin has barely budged in the months since I've been taking the iron spray - is that normal?

Of these results, does anything jump out at you that I should look into?

I notice my b12 has jumped up considerably, much more even then when I was supplementing, so hopefully that's a good thing!

I have hashimotos and parietel cell antibodies but have tested negative twice for intrinsic factor antibodies.

I'm 31 and unable to have a career or even think about starting a family - this fatigue is just sapping my life away!

I really appreciate any help. X

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Sick-and-Tired
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14 Replies
humanbean profile image
humanbean

Just for comparison, when my ferritin and iron were low I was supplementing with ferrous fumarate 210mg, one pill, three times a day. Those tablets contained 69mg of iron each, so a total of 207mg of pure iron per day. This is compared to your 5mg iron spray.

I know that some people do really well at raising iron levels eating liver once a week, and if you are one of those people then great - but you clearly aren't benefiting from the liver and the iron spray, so perhaps it is time to try something else? There are quite a lot of choices, and helvella has written a document describing quite a few of those choices :

dropbox.com/s/g8y4e7alm5ow0...

I used to buy my ferrous fumarate 210mg from pharmacies without a prescription (usually Tesco or Lloyds), but they are also available online without a prescription. Ebay is a good source, I think. These were the ones I usually bought. Notice they are in packets of 84 tablets which is enough for three a day for 28 days :

waltonpharmacy.co.uk/images...

If you supplement prescription strength iron supplements it is important not to overdo it, and to test regularly, say, every 6 - 8 weeks. This is a good test, plus some other info :

medichecks.com/iron-tests/i...

healthunlocked.com/thyroidu...

thyroiduk.org.uk/tuk/testin...

What you are aiming for - optimal iron levels - don't go over these :

rt3-adrenals.org/Iron_test_...

Taking vitamin C with iron helps the body to absorb the iron.

Sick-and-Tired profile image
Sick-and-Tired in reply tohumanbean

Thank you so much!

The hilarious thing is that I told my endocrinologist what I was taking and the dose. When she phoned with my test results she really couldn't understand why my ferritin wasn't higher and said that on this dose I should be at 70 within the 2 months I've been taking it, which was the level she said I should aim for!

Right, I'm going to order some of the ferrous fumarate at the higher dose and will retest in a couple of months.

I've not been supplementing vitamin C, only eating fruit and veg. Should I take a vitamin C supplement at the same time as the iron, or can I take it earlier in the day?

Thanks for much for your help!

humanbean profile image
humanbean in reply toSick-and-Tired

I don't know if the timing of taking the vitamin C is important, sorry. I would just suggest taking it at various times and seeing what happens. I have problems taking vitamin C for various reasons, but when I do take it I try and take it with any iron I take. I currently take a maintenance dose of one tablet, 4 times a week because my ferritin and other measures are no longer dreadfully bad.

This link is from the British National Formulary and has info on the therapeutic and prophylactic dose of ferrous fumarate that the NHS recommends.

bnf.nice.org.uk/drug/ferrou...

Note that for low levels you would need the therapeutic dose, and for maintaining an already acceptable level you might want the prophylactic dose or perhaps a dose which is lower. In your shoes I would say you don't need the maximum dose, so perhaps starting with one tablet twice a day would be ample. But in the end it all depends on how well you absorb it, which is where the regular testing comes in.

Be aware that iron must always be taken at least four hours away from any thyroid meds.

SlowDragon profile image
SlowDragonAdministrator

Was this test done as early as possible in morning and fasting. Last Levothyroxine dose 24 hours before blood test ?

Your FT4 looks a touch low

FT3 likely too low

Suggest you push for 25mcg dose increase in Levothyroxine or 3 month trial of T3

Folate low. B12 borderline

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ferritin low. Many people find the iron mouth spray is not very effective

It's chicken and egg....low ferritin and being hypothyroid

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate,

Do you take daily vitamin C to try to help improve iron absorption ?

FERRITIN and hypothyroidism

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

Post about different iron supplements

healthunlocked.com/thyroidu...

No vitamin D test

If your endocrinologist won't consider trial of T3 email Dionne at Thyroid Uk for list of recommended thyroid specialists who will prescribe T3

Sick-and-Tired profile image
Sick-and-Tired in reply toSlowDragon

Hi!

I did have he blood test done under the conditions you suggest.

That's interesting about my FT4 and FT3 levels. I'll try to bring that up with the endocrinologist in my next appointment but on the phone she said that all my levels were perfect, so I don't think she's going to take it very seriously, sadly. Hopefully I'm being pessimistic.

I was taking igennus super b-complex (which includes folate), and also tried a transdermal b12 oil for a while. I stopped these supplements a few months ago because I was thinking about getting MMA and homocysteine tests. But since I stopped supplementing it seems that my b12 levels have gone up considerably... So, do you reckon it's not worth doing the other tests and just supplementing?

Thanks so much for the links. They're so interesting, and I'm more determined than ever to get my levels up once and for all! I'm going to get some different supplements. I'm pleased to see I eat most of the things on the list of iron rich food you suggest except dark chocolate (I'll have to switch up my normal choice of Dairy Milk! :-) )

Thanks again for your help - it's heartening to know that I might be feeling like this because of something I can fix!

You T4 and T3 could be a bit higher for optimal health. Others have provided really good advice.I can only concur.

Sick-and-Tired profile image
Sick-and-Tired in reply to

Thanks so much! It's so interesting, my endocrinologist said those levels were perfect. I really should have learned by now not to trust them!

in reply toSick-and-Tired

They might be perfect for some people but if you are still symptomatic they are not perfect for you.

Did the endo recommend any further testing for your liver after that high bilirubin result? There is room for an increase in thyroid meds.

HLAB35 profile image
HLAB35

Have a look at The British Liver Trust website and check out Gilbert Syndrome. Liver support may help you. NAC and Milk Thistle come to mind, but do your research and don't take either at the same time as iron. I took soluble vitamin C whenever I was loading iron and taking tablets, but I got my mum onto rosehip* which was even more successful at boosting her Ferritin and haemoglobin ( her liver is enlarged) may be because rose hip contains vitamin a and bioflavinoids. You may be better off boiling up some lamb or beef bones to make a broth or a slow cooked brisket or stew if you struggle with fried foods like liver as broth and slow cooked meats are more digestible if you cannot tolerate fried foods. Get some digestive enzymes ( Biocare are good) to help cope with complex carbs, fats and proteins in meals. *Low vitamin A is linked to low iron, but you may be struggling to absorb the former (it is a fatty vitamin) which may be impacting on your iron. In fact if you have Gilbert Syndrome it is advised to go very carefully on all fats and fatty vitamins.

SlowDragon profile image
SlowDragonAdministrator

After you post about arthritis

Your FT3 is low

Did you get dose increase in Levothyroxine?

You need vitamin D tested

vitamindtest.org.uk

What supplements do you currently take?

Sick-and-Tired profile image
Sick-and-Tired in reply toSlowDragon

Hi, thanks so much for looking into this!

No, my endocrinologist (who I must say is one of the only healthcare professionals I've ever met who seemed to actually believe I felt ill) actually thought I probably didn't need to be on levothyoxine at all, but agreed to keep me on my current dose.

I asked the doctor yesterday to check my vitamin D, so will be going for a blood test tomorrow. I'll let you know the results!

I currently take 5,000 iu of vitamin D a day, magnesium oil, 100mg K2 and evening primrose oil (on the suggestion of the breast clinic after a biopsy on a lump came back benign a couple of months ago).

Thanks again for your help!

Ceebee26 profile image
Ceebee26

Hi Sick-and-Tired - can I ask which Endo you are seeing?

I am in the Surrey area and struggling to find one.... my GP won't refer me so am looking o go private.

Thanks

Sick-and-Tired profile image
Sick-and-Tired in reply toCeebee26

I'll DM you the details!

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